Monday 21 November 2011


Today started well.  I was able to go straight off the NIV in the morning to my normal oxygen.  Last night, they x-rayed my stomach to see if there was any blockage in my bowels.  There is one very low down, so at some point I will be having Gastrografin, which will empty me out for sure.  Not looking forward to it, but it should help me feel a lot less bloated and make my breathing easier.

Mum came up at lunch time and washed me in the shower.  I remember looking at my legs and just above my knees are all small and weak again =[  Not looking forward to building those up again - such hard work.  Generally feel weak all over today and really withdrawn.  I was speaking to the Psychologist about things I'd normally cry my eyes out about, but I just don't have any emotion.  I can't smile or cry or do anything - just withdrawn.  Maybe I'm more exhausted than I realise and a good sleep will do me good.

Last night, they put a bag at the end of my stomach tube to drain out any air that I was swallowing from the NIV.  It helped a lot and I actually slept for a full night.  Tonight, the physio said to try sleeping without it because I don't feel like I need it anymore.  I was using it more for the fact it gives my body a rest from breathing so hard.  Hopefully it'll help - we'll see tomorrow.  They've also started cutting my steroid dose, so I'm on 30mg a day now rather than 40mg.  Should also help make me more comfortable.

I'm scared I'm not going to get home at all now.  The way my body's being so unpredictable, the doctor isn't happy for me to be home like that.  Maybe they can bump me up the transplant list once I'm on it?!  You have to have a dentist check over your mouth before you go on the list and I told them I haven't had a chance to because I've been in hospital the whole time.  They're seeing if someone from the dental hospital here will do it - it would be VERY helpful if they could!

Declan is 18 on Sunday and I wish I could be home for that, but he knows I love him all the same.  Dinner soon...

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